Wednesday, January 30, 2013

What Do I Do All Day? I Watch (mostly) Quality Television

102300_wb_0007b_0This is the first in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

Television is roundly criticized as a colossal waste of time. Granted, there’s a lot of crap on television that deserves to be ridiculed, but I’m here to tell you that there is a lot of quality television available as well. You just have to do some legwork (sample a lot of awful shows) to find the gems.

There are two basic categories of shows – network television and cable television. In general, the drama and comedy series on cable, such as those on HBO or Showtime, are superior to those on network television, such as ABC or Fox. But the seasons are relatively short for the cable shows. A typical run will be 12 consecutive, weekly shows, which are completed in three months. Most network shows spread 20 – 25 episodes out over approximately eight months.

Believe it or not (for those who know me, this is sarcasm), I keep a spreadsheet of the cable television shows I watch, how many seasons have been completed, and when or if the next season will begin. I don’t know why I make so many spreadsheets. You may as well ask me why I breathe so often.

Kim doesn’t care for television. She has only a few shows that she watches during the week, and I watch those with her. Other than that, I tend to record most of the programs that I’m interested in and watch them the next day while Kim is at work, rather than watching them live in the evening while ignoring Kim. Also, by viewing recorded shows I’m able to fast-forward through the commercials. This is particularly important during a political season, which seems to be most of the time these days.

Here is a list of the TV series that I watch on cable. I have rated each show on a scale of 1 to 10 for overall quality.

Miscellaneous Cable Shows
Here are some network shows, of the comedy and drama variety, which I watch. I’m going to rate them on a different scale than the cable shows, because it’s a little bit of an apples and oranges situation.
Here are some other shows that I watch from time to time:
th No apologies. This is what I watch, for better or worse. I don’t do cop or detective shows. They just don’t hold my interest. The only reality shows I watch are the occasional singing competitions. Notice that there are no History Channel or Discovery Channel, etc., shows in my list. Are there any that I should be watching?

I watch a lot more TV during the winter. In the summer, Kim is off for about eight weeks, and there are so many more options for passing the time in the real world. Even in the spring and fall when I can get outdoors by myself during the day, the television sits idle for long periods of time. But in the winter, if not for television I am certain that I would go stir crazy.

If television were my only answer to the question “What Do I Do All Day?”, then I would have a problem. But that’s far from reality, as you will see in my subsequent posts on this topic. To a certain extent TV educates me and makes me a more informed and well-rounded person. But primarily it just makes me happy, and isn’t that what entertainment is for. 

I look forward to your comments about specific shows, and about television watching in general.

Here are my other posts in this series:

2. I Digitize and Archive Family Photos and Videos
3. I Read Books
4. I Attend Courses at Top Universities (sort of)
5. I Nap
6. I Blog
7. I Read Other People's Blogs

Tuesday, January 29, 2013

What Do I Do All Day?

2007 182 Phoebe 03 In just a few months I will reach the four year anniversary of my disability retirement. People often ask me what it is I do all day while Kim is at work.

Where do I begin?

I am blessed with a curious mind, and some tools with which to exercise it. Throughout the day I rotate my attention between my LED-LCD TV, my iPad Mini, and my laptop computer. In good weather, which I haven’t seen for a few months, I also get outside and enjoy my wonderful neighborhood while Kim busts her ass trying to mold the minds of middle school children.

I also take my share of time for rest and relaxation. My wheelchair reclines so that I can make myself comfortable for a nap on very short notice. At times, I lament the fact that I am no longer a productive member of society in the traditional sense, but nevertheless I still find my life to be meaningful and, to a large extent, enjoyable.

Although I have a wide variety of interests which I pursue during the day, I do a pretty good job of not pressuring myself into getting anything in particular accomplished unless absolutely necessary. For a healthy person, this would not be an admirable trait. For a person with a chronic, disabling disease, which stress only exacerbates, it’s a wonderful thing.

My most demanding obligation is usually publishing a weekly blog post.

So I will begin a series of posts over the next year or so, sprinkled among posts on other subjects, where I describe what it is that I do to pass the time while Kim is at work. I’ll try not to bore you with minutia.

The first such post will be tomorrow, if I get around to it.

I know. You’re all jealous. Not everyone can lead as exciting a life as I do!

Tuesday, January 22, 2013

Everything Is Not Coming up Roses

Coming Up Roses
(Photo credit: Jennuine Captures)
A recent article at had this headline:
10 Facts You Should Know About Multiple Sclerosis
Multiple sclerosis is now a treatable disease. Get the facts about MS, and find out why MS experts are upbeat about this common neurological disorder.
This just makes me mad!

For the average healthy person reading this article, as well as many patients who have the relapsing remitting type of MS, this is welcomed good news. But for those of us who are having our asses kicked by MS, this type of article does us a disservice.

It’s acceptable, and perhaps even admirable, to acknowledge the gains that have been made in MS treatment. 20 years ago there were no treatments. 10 years ago there were only three treatments. Today there are many choices of disease modifying drugs, and we are finally seeing oral treatments that do not require a shot or an IV. Yes, there has been some progress.

However, there are several factors supporting my position that our advancements in the field of MS treatment are woefully lacking. Although these disease modifying treatments tend to reduce the number of relapses, there is scant evidence that they provide reduced disability in the long term. Many patients see no benefit, or only temporary benefit, from these treatments. They are expensive – $50,000 per year is typical. They carry with them considerable and potentially serious side effects.

And here is my primary point. These drugs only work for, and are only approved for, the most common type of MS – relapsing remitting MS. They don’t work for secondary progressive or primary progressive patients, and we’re the ones who experience the most severe effects from MS.

MS drugs aren’t unique. This “treat the disease with highly profitable drugs, but don’t cure it” phenomenon occurs with all sorts of diseases. For a rather hard-hitting essay on our dysfunctional medical-industrial complex, read this Wheelchair Kamikaze blog post.

I’m not trying to rain on anyone’s parade. I don’t mind these types of articles, if only they took the time to acknowledge that so many of us still suffer terribly from MS, and we see little or no hope for improvements in our lifetimes. I am acquainted with many MS patients who struggle to get through each day. I even know several MS patients who expect to die from complications of the disease in the next few years. The picture is not rosy, as much as we would like it to be.

Note to journalists and doctors moonlighting as journalists: stop saying things like “this is a great time to have MS” or “multiple sclerosis is now a treatable disease” without qualifying your statements by acknowledging the significant number of us who are not benefiting at all from current, approved treatments. You are being thoughtless and cruel when you make these statements, although in most cases I don’t think you even realize it.

Before I get off my soapbox, I’ll point out that later in the above referenced article the physician-author makes several atrocious statements. First, she says that 85% of patients have the relapsing remitting form of MS. This is a basic mis-statement of an elementary statistical fact. Approximately 85% of patients are initially diagnosed with relapsing remitting MS, but more than half of those patients will eventually develop secondary progressive MS (which is not treatable). She also refers to progressive MS as “rare,” essentially dismissing us as the irrelevant fringe of the MS world. We don’t like that characterization, and it is not accurate.

So whenever you encounter the “good news” about MS, be skeptical. Remember those who have been left behind.

Note: Yes, I recently announced that I seem to be benefiting from an experimental treatment called intrathecal methotrexate. However, this drug is not FDA approved for multiple sclerosis. It has not been through double-blind, placebo-controlled studies to verify its efficacy. It’s apparently working for me right now, and for that I am extremely grateful. However, I live in fear every day that it’ll just stop working, because we simply don’t know enough about how this treatment affects multiple sclerosis.
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Wednesday, January 16, 2013

I Ain’t Right in the Head

1/365 [dazed & confused]
(Photo credit: PhotoJonny)
Multiple sclerosis is a disease of the central nervous system (CNS). The CNS consists of the brain and spinal cord. Something happens - nobody knows exactly what - which causes the axons (nerves) to be attacked by the immune system or in some other way degenerate over time. This can’t be good for my CNS. And since the CNS is kinda important to the rest of my body, it can’t be good for me.

Does the fact that some of these lesions are in my brain, not only in my spine, mean that I have a mental disorder? Well, MS is not typically recognized as such, but why not? It manifests itself as a combination of physical and mental/emotional symptoms, but it’s only the physical ones that are commonly discussed.

I think I’d like to be labeled as having a mental disorder. In Maine, we often describe people with mental disorders by saying, “He ain’t right in the head.” Such individuals are handled with kid gloves, and are granted significant leeway to commit all manner of social faux pas, without consequences.

If we can agree that I ain’t right in the head, then I should be allowed to do the following (hint, I already do):
  • Say precisely what I feel, no matter the social norms that I may violate or the feelings that I may hurt.
  • Dress myself in any manner which I deem comfortable, even if that means sweatpants and slippers at a nice restaurant.
  • Occasionally forsake personal care such as shaving, washing, combing, or getting the gunk out of the corner of my eye.
  • Tell the same stories over, and over, and over again (you should never point this out to me, and you must react as if this is the first time you’ve heard the story). This also applies to blog posts.
  • Conveniently forget commitments that I’ve made.
  • Categorically deny having ever made certain incorrect statements.
  • Inexplicably forget your name, even if we go way back.
  • Make you wait while I interact with my artificial memory (smart phone, iPad, and laptop) to supplement my damaged biological memory.
  • Start speaking about a complex and important issue with apparent intelligence and gusto, only to lose my train of thought and my enthusiasm mid-speech.
Don’t be mislead by my occasional wittiness and clarity here at this blog. On average, it takes me 17.25 revisions before I dare publish something. I definitely ain’t right in the head.

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Tuesday, January 8, 2013

Deep Sea Diving in a Wheelchair


Sue Austin describes her artistic wheelchair diving this way:

“It is the most amazing experience, beyond most other things I've experienced in life. I literally have the freedom to move in 360 degrees of space and an ecstatic experience of joy and freedom.”

This woman's indelible spirit is inspirational to both wheelchair users and walkers alike. Please watch her TED video, which includes breathtaking underwater footage (pun intended). I guarantee it will brighten your day.

Wednesday, January 2, 2013

Losses and Gains 2012

Cover of "A Good Year (Widescreen Edition...

Given that we have now ushered in 2013, this seems an appropriate time to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the coming year.

2012 Negatives
  • Started having mini panic attacks
  • Two painful experiences with lumbar punctures
2012 Positives
2013 Potential Losses (if my disease progression resumes these may be the things that I lose next)
  • Ability to operate zippers (already very difficult)
  • The rest of my personal grooming tasks
  • Ability to sign my own name (that’s all I currently do for handwriting)
  • Sitting up in bed, unassisted
  • Transferring to and from my wheelchair, unassisted
  • Feeding myself
  • A few things that I can’t even imagine (the devil I don’t know)
2013 Potential Gains
  • Another year of negligible disease progression (fingers crossed)
  • Saving the iBot (Dec 31, 2013 is our “mobility cliff”)
  • Trip to Jamaica (expect posts in March)
  • Still more new friends (despite my lack of social skills, they keep coming)
  • Entire summer in new, more walkable neighborhood
  • A few things that I can’t even imagine (P. F. Chang’s opens a restaurant in my neighborhood?)
  • Another year above ground
images This 2012 assessment is much more upbeat than my 2011 assessment. That was a rough year for me, and so I was naturally pessimistic about 2012. But things have turned around, at least for the moment. By no means am I assuming that my disease stabilization will continue, but it’s a bit like winning a sports championship – nobody can take it away from me. My 2012 MS Success trophy now sits prominently on my mantle, to the left of the trophy for Stuffed an Entire Peanut Butter Sandwich in My Mouth that I won in 7th grade, and to the right of the trophy for Made a Move on the Freshman Girl with the Nice Ass and Playful Personality that I won in 10th grade.

Nobody can ever take these accomplishments away from me.
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